An ATS policy statement on palliative care for people with serious respiratory illness has reinforced the importance of introducing palliative care early in the care continuum.
Presented at ATS 2022, the long awaited update of a 2008 statement also fleshes out the care delivery models recommending staged levels of primary, secondary and tertiary palliative care.
It sets thresholds for initiating each level of care based on multiple domains of lung function, symptoms, care needs, exacerbations, advanced therapies and caregivers.
One of the coauthors on the policy statement, Associate Professor Natasha Smallwood told the limbic that the 2022 update was a much broader statement than the earlier iteration.
It recognises the growth and advances in the field as well as wider representation in the development of the statement.
“The original statement was really just the ATS but in this statement there are numerous partner associations so there is really that recognition that palliative care in serious respiratory illness is actually the domain of multiple different specialist organisations,” she said.
“It really requires collaborative partnerships to try and deliver this type of care.”
Associate Professor Smallwood, from the Royal Melbourne and Alfred Hospitals, said the new policy statement also included much more about diversity, inclusivity and access to high quality care.
“This policy statement is very specific about saying we really need to recognise that everyone has a right to access this and be more proactive in trying to steer that.”
She said Australia, along with the UK, US and some European countries perform comparatively well globally.
“But there are still huge gaps. Where we really struggle is around equality of access because Australia is geographically vast and culturally diverse as well, so there are some key areas where we need to do more.”
“In regional Australia it is really challenging to access palliative care for people with chronic, non-malignant respiratory conditions.”
Symptom management
The policy statement includes a comprehensive list of clinical tools that can be used to assess different symptoms in different types of respiratory conditions.
“What was not mentioned as much in the previous statement was that it is imperative to measure symptoms because if you cannot measure it, it is very difficult to come up with targeted strategies to address it.”
Associate Professor Smallwood said while the 2008 statement focussed on pain and dyspnoea, the new statement covers a much broader range of symptoms including fatigue and cough and common symptom clusters.
“And while we have shied away from being overly specific — it’s a policy statement not a guideline — we’ve actually been much more holistic in talking about the non-pharmacological approaches as well as the pharmacological approaches to managing symptoms.”
The policy statement notes that advanced palliative therapies such as endobronchial valves in COPD and palliative radiation or stents in lung cancer may be considered in selected patients.
However effective communication around such therapies is critical.
“In reality, patients and their caregivers can fail to understand that they actually are palliative procedures and that all you are trying to do is improve quality of life and reduce symptoms.”
“On the flipside, when valves don’t go well and you have to take them out, the patients are devastated because they think that is the end of their life…because it hasn’t been framed adequately for them that these are palliative procedures which aim to improve quality of life for as long as they are useful.”
“By including them in a statement like this, it reminds people that they are important but only for a small minority of people and that they are palliative.”
First steps to capacity building
Associate Professor Smallwood said the updated policy statement was the first step in the process to integrate palliative care into disease-directed care.
“It can’t be an empty piece of paper. There has to be an education program that follows so the next step will be to try and develop some shared resources …..[and] to recognise that we need to upskill to improve capacity and competency to deliver respiratory palliative care.”
She said palliative care should be simply reframed as symptom-focussed care.
“I really hope the policy statement highlights that…that it is what we all do throughout our clinical practice. If we consider it as just best practice supportive care and that this is something we’ll do whether someone has moderate disease …or they have very severe breathlessness and we are trying to help with symptoms.”
One of the new sections in the policy statement makes recommendations for the delivery of palliative care within the context of mass casualty events and/or resource limitation.
The new entry is “absolutely driven by the fact that we had the pandemic” but also climate catastrophes or terrorist events in many different countries.
“And all of that speaks to the fact that then you have to have really good preparedness and plans to support the provision of palliative care to people who are affected in any of those types of catastrophes,” Associate Professor Smallwood said.
She said informal caregivers also receive more holistic attention in the statement whereas in 2008 it focussed on bereavement care.
While clinicians need to see caregivers as individuals, not just carers, there was often a fear there wasn’t time to deal with caregivers’ needs.
“Saying ‘Hello’ and ‘How are you?’ is a good start but it’s just not enough. This statement considers people may need support and access to resources while in their caregiver role.”
“We still underrecognise the issues — the decisions they have had to make and how it affects them.”